The Supplement Syndrome: "I'm Not Sure It's Helping but It May Get Worse If I Stop!"

By Dave R.

February 1, 2012

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The advent of HIV in our lives coincided with the beginning of a western obsession with alternative self-help and self-medication. Not that HIV was responsible for that but people with HIV were desperate to find ways of improving and extending their lives; many alternative therapies were adopted and in many cases maintained to this day. However, the biggest boom was in the use of supplements to our diets to improve general health and hopefully boost our immune systems. The rest of the population was on board because the idea of taking a few pills beat dieting and exercise hands down, and the western world at that time just wanted to look like Lee Majors and Jane Fonda. For some reason, it didn't click with the general couch-potato population that supplements were exactly that and no substitute for healthy eating and exercise.

However, people with HIV were people with a mission and researched every possible herbal and vitamin resource they could find and if they could afford them, took what was on offer in the hope that the worst elements of HIV could be avoided or removed. That's what happens when you're confronted with something incurable and where the medication is so severe. A huge world-wide industry was born and these days it seems inconceivable that supplement and health food shops weren't always a feature of our high streets.

When the same HIV-positive people are faced with neuropathy, another incurable condition, it's hardly surprising that search engines are bombarded with requests for alternative treatments and supplements to help with the symptoms. After all, the current accepted medication of anti-depressants, epilepsy drugs and opiates brings unpleasant side effects for so many people that almost anything else that works is welcome.

Do We Really Need Supplements?

You used to hear that if your diet was balanced, there was no need for extra supplements but you don't hear that so much anymore. The fact is, it's big business, huge in fact, and all sorts of parties have interests in its success -- the major drug companies included. So, is stuffing yourself with supplements and so-called super foods a good idea or a waste of hard-earned money?

20th Century man may be the first to refuse to accept that some things are just not curable; although in the past people of all faiths paid for quack remedies and used prayer to try to help themselves through illness. So by definition and I mean no offense at all but faith was the only officially recognized supplement and the rest was seen as witchcraft!

Why Shouldn't We Use Them?

Exactly: why not use what research has indicated may help to relieve the symptoms of neuropathy? Vitamin B12 supplements, Acetyl L-Carnitine, Alpha Lipoic Acid, Q10, Turmeric, Cannabis even, and many more, have all been shown to help many people with neuropathy. So what's the problem? There may not be a problem. Maybe we're just discovering remedies that have been used in other cultures for generations but because we live in the age where science and medicine are regarded as indisputable, we feel guilty about thinking outside the box. Look at the reluctance of the medical and scientific community to accept the qualities of acupuncture, massage, yoga and other practices for instance. It's taken decades for those therapies to become part of the mainstream.

The people at the beginning of the AIDS epidemic in the '80s were driven to search for alternatives and we're reaping the rewards now. It's still a money issue; everything has a price and the drug companies, which have jumped on the health food bandwagon, have kept the prices high enough to make it a profitable sideline to the chemical medications. So only those who can afford to supplement can benefit, which of course perversely makes supplements more desirable. If it costs a lot, it must be good right? Fashion and perfume houses have made millions on that principle!

But strip away those issues and we've begun to realize that supplements can help if you have a chronic condition like neuropathy and certainly if that is combined with HIV. Our ambition must be to keep our immune systems as healthy as possible and if anti-oxidants, co-enzymes and vitamins, in combination with other non-medical therapies can do that, then who's to say we're wrong? The only remaining aim therefore (besides further research into the benefits of such therapies), is to get the prices down so that everyone has an equal chance to help themselves.

We need to be open-minded but must expect that from our doctors too. We need their advice, based on their medical knowledge of what specific supplements will do to us personally but if they're going to reject new ideas out of hand, then that only encourages us to experiment and that is in nobody's interest. Luckily many HIV specialists are already aware of what supplements can do for an ailing system and are generally prepared to recommend them backed up by their accumulated expertise over thirty years of HIV. If your home doctor is unwilling or has no experience in the area, a word from another specialist may help.

This is all leading up to the obligatory advice that experimentation with various supplements may do you more harm than good. Overdosing on vitamins, especially in the vitamin B and E range, may well make your neuropathy worse and cause other problems for your liver and kidneys too. If you feel that you need supplements to help with neuropathy and can't get the necessary advice from the experts, go online and do your own research. Please be careful that you check the facts on more than one trustworthy site -- the internet is no guarantee of truth!

Are They Any Good?

Okay, you've reached the point where you're taking supplements of one sort or another. How do you know if they're working? Sounds like a dumb question doesn't it? If the symptoms improve, then there's a good chance that the supplement has helped. The problem is the nature of neuropathy. The symptoms may seem to improve but you're not sure. How long should you wait until you are sure? Will you ever be sure and will your symptoms get worse if you stop the supplement? It's a minefield of possibilities and that mixed with human nature means that many people spend a fortune on things that are not really helping at all but are reluctant to stop in case they really are making things better! On the other hand, many people have benefited by supplementing their diet and altering their lifestyle.

Just as with the medications prescribed by doctors, what works for one doesn't work for another. Nerve damage and the discomfort that can bring is unbelievably diverse and it really is a matter of trying things out until something helps. That sounds like experimentation and therefore unwise but base your choices on the evidence. What has helped many other people with the same complaint may be of help to you but there are no guarantees and simply making a list of every supplement known to have been used to help with neuropathy and then taking them is very unwise (as well as very expensive) and possibly bad for your health.

Neuropathy is one of those diseases which throws up more questions than answers and because established medicine can't give you much more than medications designed for other diseases, the temptation is to go for anything that has a good sales pitch. HIV did this to us earlier and based on that experience, don't let the discomfort, pain and frustration of neuropathy drive you to rash decisions.

Common sense must prevail: ask questions, do your research and target it at the symptoms that are giving you the most trouble. Then make your choices accordingly and with a bit of luck you will find some relief. The key thing is not to press the neuropathy panic button and clear the shelves of your local health store. Doing everything in moderation may sound like unsatisfactory advice when you want answers now and cures next week but supplements need to be looked at objectively and assessed according to your specific needs. Be gentle with your body; it surely deserves it after all it's gone through?

This and other posts are based on my opinions and impressions of living with both neuropathy and HIV. Although I do my best to ensure that facts are accurate and evidence-based, that is no substitute for discussing your own treatment with your HIV specialist or neurologist. All comments are welcome.

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English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

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